The Olympian: “Physician-assisted suicide symptom of a broken system,” by Joelle Brouner

assisted suicide, Our News & Commentary Blog, Washington state

I received news of this excellent op-ed by disability activist Joelle Brouner late yesterday. I reserve my comments for the end of the article.

Published September 28, 2007
Physician-assisted suicide symptom of broken system

Washington state is no place for the Oregon-style legalization of physician-assisted suicide. Many people with whom I frequently see eye to eye disagree with me on this point. They view the issue simply as one of personal choice. They are mistaken because, for many, the only real choice would be death.

When so many people are uninsured or have inadequate access to medical care, who can choose to receive preventive health care? How many can choose to be diagnosed in time to undergo life-saving treatments? It is cruel to beat the drum of choice when so many are effectively left to choose between death and death.

Then there is the matter of pain. Nobody wants to be in pain and nobody should have to be. Advocating death as a solution to pain is extreme and betrays a lack of ingenuity. Pain does not have to be uncontrollable; it can be effectively managed. By enacting progressive drug policy, we would make more effective pain management strategies available to doctors and their patients and assuage their fear of prosecution. Rather than pave the expressway to death, the Legislature could provide incentives for researchers who expedite the development of innovative drugs and pain-management tools.

Physician-assisted suicide is less about choice or pain management than power. If legalized, physician-assisted suicide will inevitably align the power of the state, big money interests and a broken medical system. If the state sanctions the participation of medical professionals in the killing of patients, the matter transcends the individual who dies. We cannot divorce ourselves from policy decisions made in our name. As citizens, we would all be complicit, by extension, in these deliberate deaths.

Even under the best circumstances, people face disadvantages in navigating state and medical systems. Is it reasonable to expect a person to negotiate with these powerful interests at a time when he or she is likely to have the least energy or emotional reserve? These circumstances are ripe for abuse.

Some who support physician-assisted suicide argue that Oregon- style safeguards will prevent abuses. But in Oregon, the records regarding implementation of physician-assisted suicide are destroyed. There is no way to independently audit them. We are left to trust that the records were accurate and the people who recorded them were truthful.

The American medical system has a long record of bias. Disparities in access to care based on race, class and gender are well documented. Is it so great a leap to think that a system with a record of perpetuating bias could abuse its power to promote death as a management strategy to achieve cost savings?

As a person with a life-long disability, I am all too familiar with the institutional power of the modern medical industry. Like many, I have experienced the consequences of being objectified and discredited within that system. Those who are considered inconvenient, who require too many resources, or who fail to meet an arbitrary health standard, are too likely to be the casualties if death passes for compassionate health policy. I fear that death will become the logical expectation of a system that prizes cost savings above people.

Joelle Brouner, a member of The Olympian’s Diversity Panel, is a disability rights activist.

This blog has already addressed multiple examples of the lack of accountability for medical professional professionals in both California and Oregon, something Joelle expresses concerns about in this piece.

I was digging through old articles and found that Joelle might have hit an important point in the State of Washington. There is evidence in her state that an overwhelming number of people wanting to die due to the very pressures she talks about.

In 1997, Joe Shapiro, then an editor of U.S News & World Report, published a long article on what things looked like in the Netherlands and what it might mean for the U.S. in “Euthanasia’s Home.” He shared this interesting factoid about American motivations, specifically citizens of Washington State:

Most Dutch patients–56 percent–seek euthanasia to avoid “useless suffering.” On the other hand, Americans say they are motivated by the fear of burdening their spouses and families: In a study in Washington State, that reason was cited by 75 percent of those who asked physicians to help them die. No wonder. In the United States, hospitalization and nursing home costs can impoverish. The Dutch face virtually no out-of-pocket expenses at the end of life.

Don’t take that to mean that Shapiro didn’t find any problems with euthanasia practices in the Netherlands. His balanced article found several reasons for concern – such as the light hand with which the courts in the Netherlands have used in dealing with the handful of doctors charged with violating euthanasia and assisted suicide protocols.

Read it. The only way to learn from the past is to actually know something about it. –Stephen Drake

Latest Pro-Euthanasia Research Makes Headlines by Redefining Slippery Slope and Use of Soft Data

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Well, big “news” broke yesterday with the announcement of the publication of a study that claims to put an end to any idea of “abuses” under assisted suicide and euthanasia laws in Oregon and the Netherlands, respectively. The lead author is Margaret Battin, who is a long-time advocate of legalization of assisted suicide and euthanasia, and is on the advisory board of Death With Dignity National Center. Her advocacy history is mentioned in some articles but not in others. Interestingly, the objectivity of Battin and her colleagues goes unquestioned in the mainstream news reports. I have a hard time imagining the publication of an article with contrary findings by an anti-euthanasia advocate that wouldn’t get challenged harshly on its objectivity.

Many of the articles that have come out since yesterday are little more than reproductions of the press release issued by the University of Utah. This Reuters story by Will Dunham is one such example.

One reporter, Kirsten Stewart of the Salt Lake Tribune actually contacted us for the story she was working on, but “right on deadline.” That means that there was little time to review or process the reports regarding the study to be published in the Journal of Medical Ethics. Luckily, Alex Schadenberg of the Euthanasia Prevention Coalition had emailed a copy of the Univ. of Utah press release and his own critique earlier in the day, so I was able to beg a few minutes to look over the points in the release.

Here are the points I made:

So what actually made it into the Salt Lake Trib article? Just this:

Stephen Drake, an analyst at Not Dead Yet, a disabled-rights group opposed to euthanasia, claims the study used “soft” data self-reported by doctors.

Notice that none of the reasons for calling this “soft data” are shared in the article. And nothing about the narrow and idiosyncratic definition of “slippery slope” used by the Battin and her colleagues. Maybe it’s because she was on deadline and she didn’t have time to verify my own claims. But she did have time to get this quick refutation from one of the two pro-assisted suicide advocates (in addition to Battin) quoted in the article:

Proponents of assisted death argue the methodology was peer reviewed.

“It’s the most pre-eminent examination of the data with the slippery slope question in mind,” said Kathryn Tucker, legal affairs director at Compassion & Choices.

For anyone interested in specifics regarding the expansion of euthanasia and the lack of controls there, you can check out our archived copy of “Euthanasia is Out of Control in the Netherlands” which was published as in the “Perspectives” section of the Hastings Center Report in 2005. –Stephen Drake

Addendum: Coincidentally, Beth Haller has written about Not Dead Yet today on the Society for Professional Journalists’ Diversity Blog. Check out what she’s telling reporters about us in “Activist group, Not Dead Yet, can be a significant news source.”

Addendum II: Wesley Smith has additional insight and analysis in Battin Assisted Suicide Report Demonstrates the Vapidity of “Scientific Studies.”

Reuters: NIMBY in Switzerland (and misreporting assisted suicide law)

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Hot off the Press:

Right-to-die group barred from premises

ZURICH (Reuters) – Right-to-die group Dignitas has been barred from its premises in a Zurich suburb after neighbors objected to the use of the apartment for assisted suicides, the local council said Wednesday.

It was the second blow for the non-profit association this year, after it was forced to move from a previous suburban Zurich apartment when residents complained.

Last week, the local council ordered the charity to stop using the new apartment and apply to change its official function from a residence to an “assisted suicide flat.”

“Dignitas continued to ignore the ban and still carried out assisted suicides,” council official Daniel Scheidegger told Reuters. “So we decided to enforce the ban.”

It’s apparent that no matter what Swiss attitudes are about euthanasia and assisted suicide, there’s a strong sentiment against having one’s neighborhood cluttered up with people being carted out in body bags on a regular basis.

Unsurprisingly, Reuters journalist Tom Armitage manages to once again misrepresent just who is “eligible” for suicide assistance in Switzerland:

The laws, some of the most liberal in the world, have led in recent years to “suicide tourism,” where terminally ill foreigners travel to Switzerland to die.

Armitage must not read the British press, which has carried stories about non-terminally ill Brits who have gone to Switzerland for “assistance” in committing suicide, as mentioned in this BBC piece on Dignitas:

The group, based in Zurich, has caught the headlines as people with chronic diseases from around the world travel to Switzerland to ask for its help in committing suicide.

Armitage must have been asleep when the news came out that Switzerland’s Supreme Court gave the “thumbs up” to assisting the suicides of some people with psychiatric labels.

We should all have an open and honest debate about these issues. But sometimes it’s hard to see how there’s a hope of having one when basic factual misinformation like this keeps getting re-reported. –Stephen Drake

Minimally Conscious State, Research, and the Elephant in the Living Room

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In early August, before we started this blog, there was a flurry of attention given to the latest research showing an intervention that brought about remarkable improvement in a man who was in a “minimally conscious state.” This is not the first development in this area to make the news, but it might have created more of a stir since the technique used probably resonates with the kind of “cure” story the public seems to like so much:

NEW YORK — He was beaten and left for dead in a robbery while walking home one night in 1999. His skull was crushed and his brain severely damaged.

For six years, the man could not speak or feed himself. On occasion he showed signs of awareness, and he moved his eyes or a thumb to communicate. His arms were useless. He was fed through a tube.

But researchers chose him for an experimental attempt to rev up his brain by placing electrodes in it. And here’s how his mother describes the change in her son, now 38:

“My son can now eat, speak, watch a movie without falling asleep,” she said Wednesday while choking back tears during a telephone news conference. “He can drink from a cup. He can express pain. He can cry and he can laugh.

“The most important part is he can say ‘Mommy’ and ‘Pop.’ He can say, ‘I love you, Mommy’ … I still cry every time I see my son, but it’s tears of joy.”

As I said, this wasn’t the first report that there might be more cognitive ability in some people with labels of “minimally conscious state” (MCS) and even “persistent vegetative state” (PVS) than commonly believed. Some of the research isn’t even that new. For example, in 1996 BMJ published an article by Andrews et al reporting the findings that 43% of the patients transferred to a rehabilitiation facility between 1992 and 1995 with a PVS diagnosis were misdiagnosed.

But that didn’t study didn’t make much news in the U.S. Increasingly, though, attention is being given to the uncertainty surrounding the degree of consciousness people with severe brain injury may have and what the future might hold for them.

What’s really gotten my attention, though, is what is not being asked or talked about in American media and bioethics circles. Questions are being asked about the fates of people being “written off” and left without therapy in nursing homes. But I can’t find any discussion in the American press talking about the life and death consequences that go with the PVS and MCS diagnoses, even in articles that include a mention of Terri Schiavo.

Isn’t it obvious that should be part of the discussion regarding the implications of research into consciousness and recovery? As mentioned in an earlier blog entry, 43 bioethicists signed onto a “friend of the court” brief in the Wendland case wanting to make it easier for families to end the lives of people with a diagnosis of MCS. It’s impossible to know just how many people with varying labels and degrees of cognitive disability die as a result of treatment withholding or withdrawal. Between the people with labels of both PVS and MCS whose lives have been ended through removal of feeding tubes, it’s virtually certain that at least some people have faced that end, silent and aware of what was being done to them.

So what’s going on here? Is this a classic case of the elephant in the living room? I’m not a big conspiracy theorist myself, so I doubt there’s collusion among medical professionals, bioethicists and the press in this country to avoid the topic. Although in the case of medical professionals and bioethicists, I suspect the silence may be similar to the uncomfortable silence you get when you talk to a Christian conservative about the virtual certainty that innocent people have been killed for being convicted of a capital crime.

The parameters surrounding the discussion aren’t shared by others outside this country. In 2004, Laura Spinney of The Guardian covered both the emerging research on misdiagnosis and the life and death consequences that hinge on an individual showing signs of consciousness soon enough in “Blink and You Live”:

When a 39-year-old Belgian woman suffered a stroke and fell into a coma, doctors concluded that she was unlikely to regain consciousness and, after a time, diagnosed her condition as persistent vegetative state (PVS). One of the criteria on which they based their decision was her inability to blink or track a moving object with her eyes. It was only when they discovered that the stroke had damaged a cranial nerve, preventing her from opening her eyes, that they realised their error. If they opened her eyes for her, she followed their instructions. Having regained full consciousness soon after her stroke, she revealed she had overheard all the bedside discussions as to whether it was worth keeping her alive. At no point had she wanted to die.

Others might not be so lucky. Research suggests that many patients left to die after being diagnosed as in PVS might have eventually recovered. They may have been in a twilight condition called minimally conscious state (MCS), which has until now proved difficult to identify. In recent years, MCS has muddied the waters further on what it means to be alive, and confused the debate over when is the right time to pull the plug.

See? The Brits can tackle these issues head on instead of sticking their heads in the sand. Surely we Yanks can do the same, can’t we? Can we talk about these research developments and talk about what it means in terms of “pulling the plug”? –Stephen Drake

More on Vatican Statement on Tube Feeding – Reactions and Overreactions

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Last week, this blog briefly covered the news regarding the new statement from the Vatican clarifying the Church’s position on the obligation to provide food and water by artificial means in countries with advanced technology and resources.

In the entry on the AJOB Bioethics Blog, Kelly Hills expresses these concerns:

The clarification becomes important because although Catholic doctrine does oppose euthanasia, it allows for the cessation of heroic, futile (extraordinary, and potentially painful) efforts. At question, then, has been whether or not tube-nourishment constitutes extraordinary or heroic efforts that are therefore optional under Catholic doctrine.

Ultimately, this affects more than “just” Catholics – many hospitals around the world are run by Catholic organizations who will feel bound by the ruling, and will enforce the decisions stemming from it regardless of whether or not the patient themself is Catholic.

The concern expressed here is a little premature. Catholic ethicists in the U.S. have been at the forefront of pushing the idea that tube-feeding is “extraordinary treatment” and that there is no obligation to provide it to people in PVS. In fact, organizations such as the Alliance of Catholic Health Care supported the legal efforts in California to allow the removal of a feeding tube from Robert Wendland, who was in what is now called a “minimally conscious state.” The brief that the Alliance signed was endorsed by 43 bioethicists and would have made it much easier to legally end the lives of people who are conscious but unable to communicate effectively or consistently.

And, in fact, in a September 21 article in the Chicago Tribune, Catholic ethicist James Walter expressed his fears about the Vatican statement on people in “minimally conscious state.”:

Particularly vulnerable are patients who are minimally conscious and who may be suffering acutely from their disabilities but are unable to express themselves, Walter said.

More than 100,000 patients in the U.S. have this type of extreme cognitive disability.

Walter is the director of Loyola Marymount University’s bioethics institute, in California where the battle over the life of Robert Wendland and other people under guardianship was waged.

As to the idea that this will bring deaths through feeding tube removal to a halt? Let’s be real – even when institutions want to change course, they’re unable to turn on a dime.

And it’s doubtful that many of them will want to go along. And they already have their “spin” in hand. In the Tribune article, the Rev. Michael Place of Resurrection Health Care showed his organization is ready:

“We now have a clarity in principle we did not have,” but individual cases will still need to be decided on their own, he said.

Translation: We’ll find reasons to justify our actions as we protect the status quo. Everyone can take a deep breath and relax. People will still be able to die through denial of treatment, even if they never expressed a wish one way or another. –Stephen Drake